We are excited that the Global Principles on patient remuneration are now launched, the result of months of co-creation efforts with global healthcare stakeholders to address a thorny and sensitive issue. Now the shared task ahead is to develop a methodology and process for determining market value to ensure fair compensation.
The Global Principles for remunerating the patient community for interactions with the pharmaceutical industry addresses an unmet need in the global healthcare ecosystem. The Principles were co-developed by a multi-stakeholder steering committee and refined through a rigorous public consultation process which attracted more than 300 comments from over 200 individuals and organizations. This strong response is a reflection of the interest and importance of this topic.
Building on the collaborative harmonization process used to develop the Principles, experts and stakeholders came together for a special online session of the Patient Engagement Open Forum on 23 February 2022. The webinar, entitled Demystifying the methodology of Fair Market Value when remunerating the Patient community for interactions with the pharmaceutical industry, explored current practices for determining Fair Market Value (FMV) rates. The event pulled back the curtain on a process that had unintentionally been veiled in mystery, despite being structured to support engagement between industry and the patient community.
With expert insights and the active participation of patients, industry, academia, researchers and providers, the event shed light on some of the challenges and opportunities that arise when seeking to co-create a global methodology and framework for patient FMV that is deemed fair, transparent and ethical.
- There is consensus across stakeholders that patients should be paid fairly for work done
- We should learn from the established methodologies for determining FMV for healthcare professionals and other experts
- There is a need for a robust methodology with greater transparency and objectivity to differentiate remuneration based on the activity and the expertise required to perform that activity
- In general, industry’s objective is to remunerate patients for work done in a way that is fair, market driven, compliant, consistent and defensible
- Providers of market data recognize that the data currently available is not sufficient for its intended purpose
Eric Bolesh, COO at Cutting Edge Information (CEI), has worked on FMV in the healthcare industry for 10 years. CEI is one of several firms that studies data provided by pharmaceutical and medical device companies and performs detailed analysis to calculate the market rate for specific tasks performed by healthcare professionals and the patient community. ‘We hold a mirror up to industry,’ Mr Bolesh told the meeting. ‘We can provide detailed insights showing, for example, what a Cardiologist in Bulgaria or a Pharmacist in the UK is paid. The same can be done for patient engagement but more data is needed.’
Setting market values
The model for FMV for healthcare professionals can guide the current challenge of devising methodologies for remunerating patients, although there are important differences between the two. Mr Bolesh outlined three research approaches to setting market value:
- Salary-based approach
Calculation of the value of an individual’s contribution based on their salary. This approach provides a poor measure of fair market value for HCPs, and it is not suitable for the patient community where job-related data is irrelevant or unavailable.
- Value-based approach
A second option is to bring in local consultants to assess value based on industry knowledge and historical rates of remuneration in a certain country or region. This, Mr Bolesh explained, can be too narrow and gives rise to global inconsistencies.
- Market-based approach
The third option ‒ a market-based approach ‒ is the most suitable and therefore most common. It is data driven, transparent and responds to the plethora of existing guidance from industry associations and similar bodies. This approach involves the collection of actual FMV rates from pharmaceutical, biotech, and medical technology companies. Coupled with economic indicators such as gross domestic product (GDP), it allows for the calculation of FMV rates for hundreds of different types of physicians, allied health professionals, technicians, and – yes – patients. ‘For specific roles across 130 markets, we can produce the range of hourly rates paid by industry,’ Mr Bolesh said. ‘This is further broken down to show payments at the median and various other percentiles. The range from the 25th to the 75th percentile is the fair market value; these are the appropriate and defensible rates for a given role.’
Tiering is a critical part of determining fair market value. When it comes to healthcare professionals, companies differentiate individuals based on levels of experience and expertise. In this way, they may set remuneration rates appropriate to both the most and least experienced of their HCP partners. Tiers are based on clear, objective criteria. For patients, such criteria may allow for the development of different rates for different tasks. For instance, the expertise required to give a testimonial in a town hall meeting may be different from sitting on an advisory board to co-design a clinical trial. Data experts can also provide market insights to guide company policy on remuneration for travel time, preparation time and expenses.
Wanted: more data
The problem facing data companies is that, due to a lack of a consistent methodology with agreed upon activities and expertise levels, it is not possible to produce the kinds of highly detailed, highly differentiated insights for the patient community that can be calculated for other experts. ‘It’s a chicken and the egg situation: current industry approaches tend not to differentiate a great deal among patients. They lack detailed patient tiering and, therefore, differing hourly rates,’ Mr Bolesh said. ‘Patients of varying experience are not remunerated differently. If companies and their patient partners want to alter that state of affairs, there needs to be evolution within the approach to patient remuneration.’
The lack of tiered data that is used in calculating FMV for healthcare professionals is not available in the same detail for patients and carers. ‘This means there is a high degree of overlap between the Tier 1 rates and the Tier 3 rates,’ Mr Bolesh explained. ‘If there’s low differentiation in the rates, it grows challenging to adequately reflect patient value. In some cases, it means a single hourly rate is provided for all patients, regardless of their varied levels of expertise.’ This means the rate may be too high for some and too low for others. It also gives the company little flexibility to account for different levels of expertise, experience and influence.
There are further challenges with tiering rates for patients and carers. While healthcare professionals can be recognized for the number of trials they have led or papers they have authored, it is more difficult to set objective criteria by which to assign patients to different tiers. ‘For patients and caregivers, the definitions remain relatively underdeveloped and the rates are therefore less differentiated,’ Mr Bolesh said. ‘This is a frustration for industry and patients alike. There is an appetite for establishing tiering, but we are at an early point in the evolution of FMV for patients.’
Mr Bolesh’s presentation inspired a lively discussion with contributions from the patient community and industry, moderated by Laura McKeaveney, an HR and patient engagement consultant who previously led Global Patient Advocacy at Novartis.
Dr Stanimir Hasardzhiev, Secretary General of PACT, the Bulgarian national patients’ organization, and a former board member of the European Patients’ Forum (EPF), said there is frustration and confusion in the patient community. He noted that patients and carers have no visibility on how rates are set and usually have no choice but to accept the remuneration offered (if it is offered at all). ‘There’s no negotiation ‒ rates are fixed by the company and the patient must sign a document accepting this if they want to take part in a meeting.’
The current situation gives rise to inconsistencies. Dr Hasardzhiev, who is a medical doctor by training and a patient advocate for more than 20 years, recounted a personal example where he was invited to contribute to a large meeting in the US. Despite his expertise and experience, the value of his contribution was not reflected in the remuneration that was offered. People based in low-income countries often receive lower remuneration than those in higher-income countries, regardless of the value they bring to a meeting. The process for calculating the rate was slow and opaque. ‘This took two months, by which time the price of the transatlantic plane ticket was several thousand euro while my contribution was valued at the price of ten cups of coffee in the US,’ he said. ‘This didn’t reflect the value I brought to the meeting.’
While patients have a range of motivations beyond financial incentives for working with industry on solutions, Dr Hasardzhiev said it feels unfair and patients cannot understand the opaque methodology companies sometimes use to set market rates. ‘If patients are invited to provide their expertise they should be valued as experts that help the work of companies that might bring a new medicine to market,’ he said.
Patient insights inform better decisions
‘The primary reason for working with patients is to ensure better decision-making across the medicine’s lifecycle,’ said Martin Eschbach, an experienced lawyer and head of Ethics, Risk and Compliance at the Global Patient Engagement function at Novartis. ‘We want better decisions and this is done not with anecdotes but with data,’ he said. ‘It requires robust evidence to gain patient insights’ Mr Eschbach added that where patients are providing a service that helps companies to meet their objectives, this should be remunerated accordingly. ‘That’s just fair.’
The technicalities that arise when setting FMV rates is where industry can run into challenges. Mr Eschbach said his company tries to implement remuneration for patients in an easy and palatable way that retains some flexibility within countries. This requires striking a delicate balance that accounts for local needs, along with industry codes and national regulations. ‘These are challenges that need to be taken on and require collaboration with stakeholders’ he said.
The value of collaboration was echoed by Nicole Wicki, program manager at The Synergist, who outlined the next steps in advancing FMV. ‘None of us can tackle this alone,’ she said. ‘That is why we are co-creating solutions together, striving for implementation and constant improvement.’ This, she added, is the best way to alleviate some of the tensions raised during the project meetings in an efficient manner. ‘Co-created standards and their consistent implementation will drive transparency and deliver higher quality market data.’
Despite the complexity of this issue, progress has been made on co-created Global Remuneration Principles, published in February 2022, and further advances are foreseen this year. Work is under way on Global Frameworks for a standardized approach to activities and expertise and this will be the focus of the next PEOF on 14 April 2022, register now. Public consultations will take place throughout the year on co-created Frameworks and the eventual Global Methodology for applying standards to determine remuneration at market value.
|Insights from participant discussions
The webinar attracted strong participation from stakeholders and saw an active debate in the meeting ‘chat’ forum on key issues raised by speakers. According to a poll of participants, 49% identified as industry representatives with 61% identifying as patient representatives, patient experts, individual patients or carers (participants could tick more than one box in the poll). People joined from the US, Europe, South America and Asia.*
A recurring theme in the chat was a sense that patients feel undervalued by industry, particularly in comparison to healthcare professionals who are seen as ‘key opinion leaders’ and remunerated well. While there has been progress in some countries and by some companies, patients continue to find that organizations often expect patients to contribute their time and expertise for free. The contribution patients can make as ‘digital opinion leaders’ was highlighted. Another attendee questioned whether experts that engage more often with industry are likely to be assigned to higher tiers, creating a bias in the tiering system.
The discussion on ‘tiering’ prompted a strong reaction from several contributors with some urging companies to distinguish between various levels of value added by patient experts while others were concerned about whether the criteria for assigning patients to tiers is fair and transparent. There was also some unease about assigning differing levels of value to patients’ lived experience given the subjective judgements it would entail. This highlighted a need for co-creating better standards for tiering expertise in the patient community.
While the webinar focused on FMV for patients interacting with industry, the discussion in the chat also alluded to how academia and institutions remunerate patients and the perceived inconsistencies in how patients are valued when working in diverse consortia on EU-funded projects. Positive examples of work on institutional remuneration for patient engagement in research were highlighted, including work from the UK and Canada.
Several attendees noted that patients work with industry to advance medical innovation which ultimately benefits patients. The primary incentive is not money, but everyone needs to ‘put food on the table’, it was argued. Health professionals want to help patients and advance science, but are paid for their time and contributions. The same should apply to patients.
The rich discussion highlighted the challenges that lie ahead as well as the value of the Global Principles which can be used to advocate for fairness and respect for patients.
*Participants joined the webinar from Belgium, Germany, USA, Switzerland, Bulgaria, France, UK, Spain, Greece, Ireland, Brazil, Japan, Italy, Poland, Austria, Panama, Canada, Romania, UAE, Pakistan, Netherlands, Hungary, North Macedonia and Norway.